Wednesday, May 20, 2009

Since my presentation on employment and young adults at DePaul a few weeks ago, I’ve been thinking a lot about diagnosis. During the Q&A, we talked about whether there was any way around the almost myopic focus on the condition and symptoms new patients often experience during and right after diagnosis.

I considered that question for several days after I answered it (in short, it is a life-altering experience so in the beginning, it seems natural to me that it would consume a lot of emotion). I’m not one to start constructing categories for groups of patients, since the universality of the chronic illness experience is something I feel strongly about, but I have always had one major distinction in mind: patients who have been sick their whole lives, and patients who were healthy adults before they were patients with chronic illness.

I think that distinction is important, and that’s why I tried to include patients from both camps in my book. Each group has its own unique challenges: people like me never have to go through that huge transition from “before” and “after” that formerly healthy people do. We do not have to grieve for what used to be, or mourn for the healthier, more dependable bodies we used to have.

(Not that we don’t have our own set of losses to deal with; we do.)

It’s a question that seems to be popping up on blogs and in discussions a lot lately: Which is better, to have known healthy and a “before” or to have never known a “before?”

All I can say is that this is my normal, so I don’t miss what I never had. Nor do I really spend too much time thinking about what it would be like to have a different experience, to envision my life minus the major medical calamities and minor comical indignities.

But lately I’ve realized there is more to it than simply healthy versus sick, or before versus after, and it relates to the process of diagnosis. True, I will never share the same shock and transition that once healthy people do when they become sick, but I can commiserate with the “before” and “after” of getting a diagnosis. An accurate one, I mean.

Sure, I’ve been sick since my first auspicious breath of air (hello collapsed lungs and pneumonia) but for the majority of my twenty-nine years, only some of what is wrong with me was diagnosed and treated correctly. I know what it’s like to have doctors assume you must not be following their directions if you are not getting better, and I know what it’s like to finally get a diagnosis that matches your experiences and symptoms, that takes all the complications and contradictions and makes sense of them. As I’ve written before, when the explanation of illness matches the experience of illness, it’s a good thing.

Last fall, I asked you about the semantics of illness, where I made distinctions between the biological aspects of disease and the patient’s subjective experience of living with illness. As I wrote in the follow-up on language and the patient experience, having PCD and bronchiectasis did not make the actual symptoms I’d lived with forever different; it just made them more understood.

Which leads me to my final point—I realize it’s been a circuitous route this time. (Honestly, my propensity to ramble is directly related to my caffeine intake, and the filter in the coffee pot has been broken all week. Less coffee=more words.)

Where does all this leave the people who live with symptoms but have not received a diagnosis? If a label doesn’t change the course of treatment, perhaps it’s not as big a deal. But what if it would change it, the way it changed mine? And more compellingly, does it change the way the external world—from doctors and nurses to employers to friends and family—responds when the patient can give a concrete name or label?

If it does, then the real question is this: why are we so intolerant of ambiguity?

4 comments:

I kind of ride the fence on this, because my symptoms started in about 5th grade, so that was old enough to remember the "old me"! And now I have a new diagnosis, Chronic Lyme Disease, and I can't find the treatment I need like ANYWHERE!!!

This is such a good documentary, i recommend that you and everyone watch it. It's a sad reality for people like me... http://underourskin.com/

I love that question about why diagnoses are so important. for me, it was validity. Simply, no one believed me OR my body that I was experiencing what I was experiencing, and them not being able to put a name to it DID NOT help my case. I was denied symptom treatment/management because they couldnt find a cause for my symptoms, therefore, questioned my symptoms existence in the first place. a Diagnosis is a check mark on your experience, saying not only "ok we validate your experience as being XYZ" but also "you have a RIGHT to being treated and helped by the medical community" and sometimes other communities as well. I don't really remember an "old me"- i was pretty young when symptoms started, but since diagnosis and accurate treatment, I have gotten a new me! My before and after are somewhat reversed in a way. My before is a mess of problems and misdiagnoses, and my after, a formal diagnosis of a lifelong illness, lifelong treatment plan, and really great recovery to a renewed body. Funny how the world works.thanks for writing on this fabulous topic!

My grandmother lived an otherwise healthy life until she had shingles in her early 70s. The next year and a half was wrought with a laundry list of symptoms, none of which any doctors seemed to piece together to find out what was actually wrong. Finally, when she became so ill she couldn't breath on her own, she was diagnosed with Lou Gehrig's and told she had maybe two weeks left.

My family and I constantly talk about "what if?" What if we had known a year or six months previous that THIS was the problem. That she really did have a disease, that it wasn't just lingering shingles or depression and she just had to try harder in physical therapy if she wanted to increase her strength and walk again. We spent a year without a reason for her continued decline. We spent a year confident that she would get better with the right treatment.

Knowing the problem--having a diagnosis--wouldn't have saved her life. In fact, she probably would've died sooner because she wouldn't have stayed on a ventilator while we waited for our second opinion. But it would have given us an answer, some validation and helped us prepare better for the future. Without a diagnosis, we were clueless and so was the medical community (I have rants about that, but that's another story).